Anastasia: The Early Days

Last night a moment arrived that we knew was coming but for which we could have never prepared enough. Our baby daughter Anastasia, born only eight months and two days ago, breathed her last as her mother and I held her in our arms. We have been preparing for this moment from the day of her birth back in April, but no amount of mental preparation really makes you ready to the moment when your child’s soul passes to eternity while their body remains behind.

The initial couple hours was much harder on mommy. I switched over to “on a mission” mode: keeping fastidious notes in Anastasia’s medical journal; making sure the kids were brought to see Anastasia one last time in an orderly and disciplined manner; notified our family, our pastor, and several friends; began cleaning and clearing our living room to make way for my wife’s sister and a handful of friends who immediately came over; generally keeping busy and being useful. But there were little things that prevented me from staying in the mindset of “I’ve got a job to do and need to focus only on that” which I didn’t expect. Like turning off the auto-timer on my coffee maker that had already been set to start brewing at 5:00 AM the next morning: the time I get up to take over watching Anastasia, that precious hour and a half when I would have her all to myself in the quiet stillness of the morning. This morning was also quiet and still, but missing was the grip of her tiny hand on my pinky while the rest of the house slept.

At 10:46 PM last night I made the final entry in Anastasia’s medical journal: that she was departing our home for the last time, en route to the funeral home. We had Anastasia’s body buckled into her car seat and I carried the her out to funeral home’s van. The phrase “I’ll take it from here sir, we’ll take good care of her” hit me a lot harder than I would have expected. It’s one thing to know that God gives you your children only for a while. At some point we have to let them go and make their way in the world. If we’re more traditional, we raise our daughters in obedience until we give them away to live according to God’s calling for them in this life. The realization hit me hard: in handing over the car seat I was giving away my little girl… not to any vocation of this world but giving her to God. How can I not be happy for her and proud that her pure, innocent soul now sees and will see God face-to-face for all eternity? At the same time, how can I not shed tears of sorrow that I can no longer hold her in my arms?

Now begins the bittersweet week where we will celebrate the Mass of the Angels before Anastasia is buried in the “little heaven” section of the cemetery which is reserved for the Baptized who died before attaining the use of reason. Now also, in a renewed way, we strive to live in a manner which is pleasing to God so that we can see Anastasia again in eternity.

Sometimes I’ve thought of children who die before they are able to offend God as the lucky ones: they go straight to heaven. But on second thought, maybe they regard us as the lucky ones. While they were never able to offend God they were also incapable of doing what we can do every moment of every day: willingly and selflessly give our thoughts and actions to the service of God. I imagine that Anastasia is praying and interceding for me, her mom, and her siblings with the hope that we’ll not only make it to heaven with her but that she’ll be able to tell the other innocents around her in heaven: “See those radiant souls waaaaaay up there, closer to God? That’s my family!!!” And so I renew my vows to renounce satan, his works, and his pomps and to serve God as thoroughly and completely as I can.

Pray for us, Saint Anastasia. We are working to be with you as soon as God’s Will allows!

With a mix of joy and tears,
Daddy and Mommy

Resting peacefully, both before and forever!

In our arms for a while; in our hearts forever!

You can stop praying for her Mr. Bear — she’s praying for all of us now!

It doesn’t seem like it’s been two months since the last update… then again, at times it feel like it’s been much, much longer. In the interim we — Anastasia’s mom and me — have faced our toughest challenge yet: four weeks during which we had overnight help only four nights the whole time. When Anastasia sleeps through the night (or at least most of it) it’s not too bad, but when she has a rough night we might get two hours of sleep in aggregate over eight hours. Not fun… and dad even had to take a couple half-days off of work just to get some sleep.  What to do? At the prompting of a friend we started a novena to Saint Ann for assistance in finding consistent overnight help — more about that in a couple paragraphs!

Overall, you could say that Anastasia today is a slightly chunkier version of the girl she was two months ago. She still has lots of seizures, she still has both good days and nights as well as bad days and nights, and while she sometimes exhibits signs she might be declining, she still seems more robust than we could have hoped a few months back! By the numbers Anastasia is now in the “one percent” as 99% of babies born with holoprosencephaly don’t live to six months of age. By diagnoses, she’s had a bit of a roller-coaster ride. Toward the end of September she showed signs of having a stomach ulcer: spitting up most all of her feeds, some of the stomach contents becoming quickly darker in color until they looked rusty brown (indicating blood). With the advice and consent of doctors we altered her feeds to pure Pedialyte for a couple days, then gradually re-introduced milk at increasing ratios once she was over the symptoms. We also changed her feeding schedule to slower rates whereby she was effectively on a continuous, slow velocity feed.  Things seemed to be better until about a week ago when she started spitting up frequently again, though not as much volume as when she developed the ulcer, and we returned to a mix of Pedialyte and milk. Now she is back on full milk feeds except for one half feed a day is pedialyte, to give her stomach a break and hopefully prevent the ulcer from acting up again. When she developed the ulcer they started her on another medication — a proton pump inhibitor — to reduce the acid in her stomach and help heal and subdue the ulcer.  For the most part the intermittent rebalancing of feeds and meds seem to be working.

The huge update since the last update, though, is that we have found consistent overnight help! A 20 minute drive from our house is the convent of the Sisters Servants of Mary, an order dedicated to the overnight care of patients who are sick and/or dying.  We had heard of them before but were hesitant to commit to the logistical requirements (picking up the assigned nun at 8:30 PM, having her back to the convent by 6:00 AM the next morning). But after four weeks of (severe?) sleep deprivation, we decided that even if we had to provide all of the rides for the sisters ourselves it would be worth it just to get some sleep at night. On October 18th we phoned the convent, the mother prioress came to visit to meet Anastasia that same afternoon and assess her/our needs — and assigned a sister to start helping us that night!  Since then we’ve only had one night without assistance!  The difference for mom has been huge: instead of feeling constantly tired and stressed she only feels partly tired, less stressed, and very blessed. For dad it’s been a night and day difference in terms of the ability to concentrate at work.  On top of that, several people have volunteered to provide rides for sister (openings are still available for those who wish to help in this way) which allows mom to get more sleep in the morning. Did I mention we are feeling very, very blessed right now — and not just for the ability to sleep again?  Additionally, homeschooling is going pretty well, which is a minor miracle in its own right considering all that is going on right now!

It’s not all roses though. I mentioned that the hospice nurse has commented that Anastasia is showing signs of decline. Days when she is pale and lacking in color have become more frequent; she hasn’t smiled at mom in a few weeks; in the last week she has been sleeping far more than usual, almost like she’s trying to get over something. She has shown signs of downturn in the past only to be followed up with an abundance of life and vigor. We know our days with her are short and even at our most sleep-deprived moments we seize every moment we can to love and embrace our tiny Saint while she’s still with us.

I’ve been reflecting a lot the last few days on the saying that God doesn’t give us trials without the means to face them. If nothing else, with Anastasia we’ve learned that sometimes this means the help God has prepared for us is only available by asking others. Local friends and family — and family and friends not local, including new friends we’re only now meeting because of Anastasia — have been so generous with prayers and other helps without which…. well, it’s not an exaggeration to say I don’t think we could have handled this challenge much less managed to maintain most of our normal activities (like homeschooling) with minimal interruptions. The debt of gratitude we owe cannot be fully accounted — much less repaid! — without recourse to His Treasury, and if there is one thing of which everyone who has/is helping us can be certain, it’s that you are all in our prayers!

With gratitude beyond measure,
Daddy and Mommy

And now the best part: two months of pictures!

Naptime on mom!

“I know I make chunky look good!”

Tummy time!

Stephen holding his little sister!

Snoozing sans tubes!

Story time!

We might be sleepy but we can still pray!

I suppose it goes without saying that “no news is good news” from a certain perspective.  Anastasia is more work than any other of our children by herself, but in aggregate her seven siblings exert quite a demand on the time and attention of us both so while we do have a good excuse — eight of them, actually — for this update to be so late, this is something we initially planned to send weeks ago.

Anastasia has been progressively doing better. She still has “storming” episodes (periods when she is having seizures that won’t respond to the rescue drugs) but not as frequently and not lasting as long as they used to. These consist of high continuous heart rates, frequent seizures varying from quiet and mild to noisy and intense, agitation and body temperature irregularities. Rescue drugs do not seem to help these episodes… at least not in a timely fashion.  She’s had an adjustments in medications which has helped with reducing the episodes, and we have added in a new med that is often used to help children who have night terrors. The overall medication adjustment has helped calm her brain a little. We give this to her twice a day and credit her improved condition to this in addition to the increase in seizure meds, as well as the many prayers from everyone!

One of the reasons Anastasia has needed these medication increases is because she has gained considerable weight recently. Her visit to the endocrinologist on August 10 revealed a weight of 12 lbs. 1 oz. (and 21.6 in. long). July 30 she had just weighed in at 10 lbs. 13 oz. We are not sure if perhaps her kidneys were holding a little extra water and that was contributing to the weight gain, but she is plumping up with cute fat rolls and everyone is loving it!

We got some family photos done recently (a little taste below); Anastasia’s cousin Veronica did the honors, as she has her own budding photography business (please check out her website!). We will try to post more of these as they become available.

Night help: it’s been a HUGE relief to get some overnight assistance! We get help 5-6 nights a week (some half nights, some whole). We still have not heard back from any nursing agencies about getting help from them, but Medicaid has allowed us to hire our own help using a payroll company, so our three regular nighttime helpers are people we know and trust. One other occasional night time helper volunteers her time, mostly during the day, but on some of the nights when we don’t have help and we are very short on sleep, she stays until 1 or 2 am.  What also helps is that Anastasia will sleep through most of the night about half the time, which helps us and our overnight helpers! 🙂

Recent “yay“ moments: Anastasia has attempted to nurse a few more times, for longer periods of time (a couple minutes as opposed to 10 or 20 seconds) and with a little bit of success.  She is making noticeable though small amounts of progress in occupational therapy. She is still smiling and focusing her one good eye on mom almost daily. She recognizes mom‘s voice and turns towards her when she hears it. 

A couple new items to share: Anastasia had a visit from a chiropractor the other day, and she also got to take a dip in a saltwater pool with us a little over a week ago. The chiropractor, who specializes in pediatrics and pregnant mothers, did a house call on Thursday. She did some gentle adjustments on different areas of the body and Anastasia‘s head is now smoother and a little bit rounder, a little less pointy at the crown. She released a tense muscle in the back of her mouth so hopefully she will be able to nurse a little bit better. The chiropractor was very excited to work with her, and is looking forward to coming back next week and hopefully many more times.

Anastasia did wonderfully in the pool. She did not need her oxygen, and her feeding tube was already out, so she was “wireless.“ She already loves the water, sometimes even practically sleeps through her baths, and she was pleasantly vocal in the pool. We kept her in there for about 20 minutes. It was a happy day!

Thank you again for all of your prayers — and your forbearance on the slow updates!  We are praying that her storming episodes get under control and that we can have more alert time with her!

Through drowsiness with love,
Daddy and Mommy

And the best part: PHOTOS!!! 

A little sleepy, but that’s okay for formal pictures. It’s exhausting being so cute all of the time!

Anastasia with her supporting cast

Anastasia’s awake photo (by cousin V)

We’re not sure if she’s striking a disco pose here or not.

“Wow…this sort of reminds me of the day I was born!”

It’s always cuddle time — good thing she’s got cuddly brothers!

Originally we planned to post an update on May 27.  Then June 1. Then June 15th. Then July 1. If I were clever I would say I was waiting for a major milestone date but… just been too busy. Nevertheless, today marks three months since Anastasia was born!

In a sense, no news has been good news: Anastasia has been healthy and growing, with her rough days and nights being fewer than the good. These are the days of balancing in our minds that 99% of the babies born with the diagnosis Anastasia has don’t make it to six months of age but right now she seems to be vibrant and relatively healthy!

And as it might be imagined, these days have been BUSY! Summer has begun, which means lawn work, garden work, fireworks, homework (home-school season has a bit extended this year)… and I’ve honestly forgotten everything else we’ve been doing. Anastasia takes up a lot of time and consideration by herself — AND she has seven older siblings who collectively take up a massive amount of time expending their boundless energy driven by their insatiable curiosity and endlessly creative ways of inventing mischief! I’m sure, to some, it sounds insufferable but even though Stephen the little boys have been missing their mom it’s unmistakable that even the youngest are “growing up” a bit with the responsibilities of their little sister. Not always as much as we would like, but there is definite improvement!

Which is all a really long way of saying that the “abnormal normal” continues but with some improvements. We have been able to obtain overnight help for Anastasia; it’s not an every-night feature right now but we are certainly grateful for the nights of full sleep we get! Speaking of which, I’m going to wrap up this long-overdue update and include some photos of our little Saint before I get some much-needed sleep! I promise not to take so long to send an update next time!

Tummy Time!

Little Big Brother!

Sweet Big Brother!

An old-fashioned girl…

Anastasia and Aunt Sister!

As we progress further into the “abnormal normal” we encounter challenges which we knew would be challenges — but didn’t realize how challenging they would be until they challenged our ability to challenge the challenges.  The big problem this week is lack of sleep which leads to forgetting some things, like synonyms for words like “challenge.”  Did I mention that getting enough sleep has been difficult? I don’t recall…  Linked with lack of sleep is a reduced ability to fight off colds and the like; dad is currently on anti-biotics for an ear infection and we’re trying to make sure mom gets enough rest to not have something similar develop from minor-ish cold symptoms.

Anastasia has had more good days and nights than bad this week.  She has needed a lot less suctioning, has had fewer oxygen desaturations, her heart rate has been more stable, and she has had fewer body temperature irregularity issues.  Also, she has needed less oxygen overall, she has been more alert and seems to be trying to focus and even track a little with her right eye.  Friday she brought up mucus twice, and while that was disturbing and a little worrisome, she is breathing better and rested well after that.

Mom and dad have been taking turns doing the “Anastasia Watch” in the living room while trying to get some sleep (while the other actually sleeps in their normal bed). This sort of works but doesn’t result in a normal night’s sleep. We’ll have to experiment with some tweaks to the system. Something which helps immensely is the assistance from a couple generous friends who come one or more times a week around 9pm and stay until after Anastasia’s midnight feeding. This has made it possible for both of us to get longer stretches of sleep at a time, which seems like a luxury these days.

After having time to make some observations, we’ve noticed that Anastasia reacts poorly to fragrances!  Whether this is linked to her medical conditions or mystical prodigy though which she’s expressing a revulsion to vanity isn’t exactly known right now.  We just know that perfumes, body spray, clothes that have been washed with scented fabric softener and/or dried with dryer sheets seem to be causing her problems. So if you’re coming to visit and want to hold her, just remember it’s not personal but Anastasia would greatly appreciate it if you use unscented perfume.

Also this week, Anastasia was visited by an occupational therapist who has taught Mom how to do some things to help Anastasia eventually (hopefully) be able to nurse or bottlefeed, as well as some exercises to help her start associating right with left.  We hope she will start to learn rolling from back to side or tummy to side but this is a 6-month goal. Stay tuned for updates.

We are touched by all those who have reached out to offer help, especially with caring for Anastasia’s siblings: it has made a world of difference!  And a special thank you to Anastasia’s Aunt from Saint Louis who arrived at 9:00 AM and hasn’t stopped cleaning since she arrived! Not only are you all being remembered in our prayers, but we will be having Masses said for you, as benefactors of Anastasia and our family.

With drowsy gratitude while double-checking our phones to ensure it’s not actually Friday and we can have meat with our meals today,

Daddy and Mommy

Always the best part: Photos!

A Birthday Re-post of a photo from a couple weeks ago of Anastasia and Grandma

Sleeping peacefully. Also a textbook perfect orientation of cannula-to-nose.

Grandpa and Anastasia

Anastasia getting some late afternoon outdoor air with Mrs. C.

Anastasia with Uncle Greg and Aunt Amy — and Meg.

Explosion of color!

Everyone is praying for Anastasia. Everyone!

Stephen and his baby sister

The goal was to publish an update Tuesday night… then Wednesday night… which in a nutshell is the primary feature of what I’m calling the “abnormal normal” schedule into which we’re falling of late. Anastasia, quite understandably, takes up so much of our time that there is precious little for other things like writing update blog posts. Or staying current at all times with things like dishes, laundry, the older kids’ homeschooling, announcements from Microsoft and Google’s annual developers’ conference this past week (okay, that last one was only noticed by dad). Unfortunately it also means that some of the kids have been a bit deprived of dad and mom time as well and it’s reflected a bit in their behavior and this is a failing on which I need to make a point of addressing not just tonight and this weekend but consistently. Please pray for me on this point.

In more general terms Anastasia is showing her strength as a fighter even though that has been primarily manifesting as “fighting to breathe.” Another feature of the new abnormal normal is her need for oxygen assistance to breathe. Pretty much all day, every day, for the past several days Anastasia has needed between 2 and 3 liters of oxygen. At this point I don’t know if she will ever be able to breathe without her Darth Vader machine (oxygen concentrator); to make sure she continues to receive oxygen even if the power goes out (like it does, at times, from summer storms) dad bought an uninterrupted power supply — http://a.co/8GGPyUJ — which should keep the oxygen concentrator running for at least a few hours with the power out… more than enough time to be ready to switch her over to bottled oxygen if the power stays out for an extended period of time.

In addition to needing oxygen assistance, Anastasia has been showing signs of more labored breathing more frequently than before. If you speak respiratory therapist the term is “retraction” and it’s not the way she’s supposed to be breathing. I’m sure I could research this and give a concise summary but, in practice, when she starts breathing this way I default to the role of asking mom what I can do to be of assistance. In reality there’s little we can do beyond changing her position or cupping the oxygen over mouth and nose to help her breathe correctly when she starts retracting. And there’s also the seizures too. They are still present as a background feature; the good news is that since her prescription was altered due to her increasing mass she’s had fewer cases where it has been necessary to administer the rescue drug and that makes US breathe easier.

As we’ve shared Anastasia’s story these past 35 days some of you have shared it with others and in the process we have been introduced to a couple in Pennsylvania who had a baby with symptoms that are almost an exact match to what Anastasia has currently. Getting to meet them — via the magic of internet video chat — and learn more about their daughter, how they had to medically intervene, and what to expect between now and when Anastasia is called to heaven has been a huge help. I know we’re not alone and in every update I’m exhausting my vocabulary and phraseology to express my gratitude to everyone who has helped in the myriad ways they have and continue to do but having the chance to talk with a couple who has walked this exact same path, who can share lessons learned, medical techniques used, how they dealt with the prolonged uncertainty of knowing their baby would die young but exceeded the learned doctors’ most optimistic projections on how long that would be… talking with someone who has walked this exact path and being told “you’re on track, you’re doing it right, just keep going” is massively reassuring.

Which is not to diminish the help everyone else has been giving! We wouldn’t be able to be “doing it right” so far if not for the generous help everyone has given us. I’ve been pondering the thought that God never gives us a Cross that we cannot carry; something coming into stark relief during this trial is that being forced into a position where we have to ask for help is, in many ways, a far heavier burden than the ones we can simply carry by ourselves. Having to slay our pride and rely on others is such a hard thing to do and the refusal to do this in society leads to so many evils, not the least of which are the crimes of abortion and assisted suicide, both of which, it seems to me, to involve a refusal to ask for help from others in the face of a burden we know we cannot carry on our own. I pray that nobody in my family ever develops the kind of stubborn pride which could lead to so many evils, so much suffering in the long run…

And when not pondering such topics I’ve been thinking thoughts — and uttering prayers! — of gratitude for everyone who is and has been helping us. The other thing that’s been apparent to us for a while is that we will never be able to repay the debt of gratitude we owe to all of you and implore God to return to you many-fold the kindness and help you’ve shown us!

Embracing the abnormal normal — and Anastasia — while we can,
Daddy and Mommy

PS: And while an update with only words would still be an update, it would be an inferior one!

One eye open (and slightly rolled back which is typical when she has a seizure)

There’s never a bad time to snuggle with mommy!

The Polka-dot Princess peacefully posing

Sleepy mommy — and baby

Littlest big brother and Anastasia — and Sugar Bear too! 

Grinning brother and Anastasia

Big Sister — who has been a big helper! — and Anastasia

Biggest Brother and Anastasia

A really quick update lest too much time pass without conveying yesterday’s good news. During the two o’clock hour on Saturday the Cinco de Mayo, Anastasia returned home! We realize that so much about her condition is beyond our control and understanding, but we are, without question, better prepared and trained to prevent a repeat of this past Tuesday night.

Before Anastasia’s return, we got a start on the summer here at Anastasia’s House: dad serviced the lawn mowers and rototiller; Biggest Brother gave the back yard it’s first mowing of the year, and Anastasia’s other brothers tried to stay out of the way of Biggest Brother and daddy. Later in the afternoon, after Anastasia returned home, daddy rototilled the garden twice more and Biggest Sister and mommy planted root crops (since that’s what the planting guide recommended) as well as some other items that had been growing in egg shells — more details on that later when daddy fully remembers what those were.

And, like after Anastasia’s last homecoming, the time has flown and the chance to sit and reflect on things has been minimal. Rather than going to Mass as a family we split into two shifts so Anastasia could stay home with adult supervision while daddy took the Middle Five to the almost-noon Solemn High Mass.  It’s a good kind of busy though, the kind that means our family is all back home under one roof and life is back to as normal as the new normal is going to get.

Every update I write I try to find different words to express my family’s thanks for all of the help and love we’re received this past month. On this final Sunday before the Ascension I’m reminded of how, regardless of how we fail to measure up to His Divine example, Jesus never fails to extend to us His forgiveness and Grace if we will only be willing to re-commit to being His faithful servant. While it happens more often than I would like to admit I’m glad He doesn’t tire of renewing His love to me and in that spirit I implore, yet again, that He bless you abundantly for the help, prayer, and  support you’ve given Anastasia’s family this past month.  We have no idea how much longer we will have with her; may Jesus reward you a hundredfold or more for helping us spend as much time as possible with her.

With hope for a healthy summer,
Daddy and Mommy

And what would an update be without pictures?

Pacing herself, containing her excitement about returning home!

Biggest Brother mowing the lawn for his baby sister… not sure he realizes she’s more of an indoors enthusiast at the moment.

Anastasia can’t contain her excitement — mom is doing her best to maintain an even demeanor.

Has it only been two days since we last sent an update about Anastasia? Once again the events of this week have left me in a time warp and having to look at my phone or computer to determine what day it actually is. So much has happened…

The official word on why Anastasia was having breathing issues on Tuesday night is accumulation of secretions in her throat which were partially blocking her airway (which lowered her oxygen saturation, which raised our heart rates). The secretions are common in infants with HPE and we were given a syringe bulb when we left the hospital last Friday but that was insufficiently effective against her issues Tuesday, even if we had realized at the time exactly what the issue was. So Tuesday night the medical team used a proper suction device to clear her airway and added an order for a more effective suction device to our durable medical equipment (DME) prescription. In terms of breathing assistance, she was put on a CPAP in the wee hours of Wednesday morning but has since re-graduated to only a cannula; we’re working on getting her oxygen supply rate down to the point where she’s fine on room air or low enough that there’s no objection to returning her home.

I mentioned that the initial screening of Anastasia’s lungs on Tuesday night ruled out concerns about her having caught a cold. A further test to determine if she had a cold, flu, or common viral infection came up negative, another great sign. Had this update been sent 24 hours ago I would have mentioned that, in all likelihood, she would be making yet another Friday afternoon homecoming.

But yesterday afternoon her breathing stopped. And for mom, who was in the room with her, time seemed to stop. A score of nurses didn’t stop but swarmed the pod where Anastasia was turning blue and purple due to lack of oxygen. The same issue of secretions that caused us to return to the hospital and NICU on Tuesday night had returned, only more so. Anastasia’s airway and lungs were suctioned and breathing was restored. Unfortunately, she also aspirated some of the stuff that was blocking her airway so now “Is that going to cause a lung infection?” is a question the routine observations of her status are trying to answer. So far the answer is in the negative and we pray it stays that way.

So for now the expectation is that she won’t be going home today but we are hoping for tomorrow… and I’m hoping to find time for an update within the first 24 hours of her return home when that happens!

Again, our sincere thanks to everyone who has been praying for and helping us in other ways — like our neighbor who drove his riding mower over to my house and cut the lengthening grass (I haven’t had time to service my mowers for use this season yet). Without all of the help I think sleep would go from being the best 12 hours of my week to something to which I aspire to experience again before Labor Day… You are in our prayers and we implore God to bless you abundantly in return!

With gratitude and drowsiness,
Daddy and Mommy

I’m not so out of it that I’m going to forget a photo:

CPAP: Continuously Precious Anastasia Peeking (at you)

Last night, not long after finally sending out the delayed update about Anastasia’s homecoming, we noticed that her breathing became labored and her coloration began to be a little less pink. We checked her oxygen saturation levels and discovered they had dropped well below what they should have been (low 60s versus upper 80s, lower 90s) but she recovered her levels once we gave her oxygen via a cannula. Per protocol, we contacted the palliative visiting nurse on the phone, described the situation, and she told us to go to the ER at Children’s Mercy. Not exactly what we were planning to do at 10:00 PM but then we weren’t really in charge of the timeline and our little riddler decided to throw us another puzzle.

I suppose the trip to the ER (and then on to the NICU again) was good in the sense that any concerns we had that Anastasia had caught the colds that were going around the house this weekend were put to rest. Observation of her lungs via stethoscope and x-ray revealed that her lungs are fine. For reasons not fully known at the moment, she was accumulating CO2 in her blood and having trouble expelling it (hence the labored breathing). Additionally, but unrelated to the events of last night, she’s been responding less reliably to her anti-seizure “rescue drug” which suggests she’s attaining a tolerance to it and a larger dose is going to be required to bring her out of clustered, break-through seizures. So having her in-house where the big brains in neurology can observe her — and possibly alter her dosing schedule — is a blessing too. Our little girl’s first month has been a reflection on life in miniature: you can make all the plans you want but things beyond your control tend to intervene and steer you in directions you couldn’t have anticipated. However, if we maintain peace of soul in the process we’ll discover opportunities for Grace we couldn’t have imagined. We still want her home and breathing without mechanical assistance, but may God’s Will be done.

So at the moment we’re somewhat back to where we were a week ago: Anastasia is in Children’s Mercy NICU. But unlike last week we’re somewhat confident that she will be able to return home in a few days at most…. at least that’s what her condition is leading us to believe at the moment.

Thank you for your continued prayers; please don’t neglect to pray for those who have been able to help us in various way, such as Mommy’s friend who immediately drove over to our house last night to babysit (be there in case the kids awoke). We cannot thank you all enough.

With patience and hope in the face of renewed uncertainty,
Daddy and Mommy

Despite the setback we cannot neglect the best part: a picture!

Like deja vu all over again: snuggling in the NICU

The bad news is that my prediction of sending an update last Friday or Saturday was missed by about three and a half days. But, honestly, we have a good reason! And the reason for this delay is that during the three o’clock hour this past Friday Anastasia returned home! It crossed my mind as we drove home from the hospital that the events of the three o’clock hour on a Friday a couple millennia ago opened the door to our eternal homecoming so Anastasia making her earthly homecoming during this particular hour seemed rather fitting.

Notwithstanding the difficulty of making predictions — especially about the future — I’ll admit that in the anticipation and excitement of getting our tiny princess back home I overlooked some pretty simple math: not only did we need to do the things we had been doing previously (mom: harvesting milk and being with Anastasia; dad: writing computer code at work) but we would also be handling a lot of the things that the medical staff had been doing for Anastasia at the hospital. Additionally, there are the other seven kids who all exhibited a mix of curiosity, excitement, willingness to help, a desire to go ride bikes and play — oh hey, a school bus! Yep, somewhere in my mind I should have remembered and calculated just how packed the schedule would be… And then there were the colds. Nobody in this house authorized dad to be knocked out with a cold on Sunday but, in retrospect, if we can get through that right off the bat it only gets easier from here on, right?

Despite being only three weeks old, Anastasia has managed to accrue some luggage as part of her return from the hospital. Pulse/oxygen monitor? Check! Medications? Check! Phone numbers in case we need to call in experts? Check? Full schedule laying out in detail feedings every three hours, scheduled medications and as needed rescue doses? Check! Feeding machine, extra feeding tubes and associated adhesives? Check! Oxygen supply? Check — but mom and I might need to use that to catch a breather from time to time.

A question I’ve somewhat intentionally avoided until now: how is Anastasia actually doing? I mentioned in a previous update that despite her youth she’s managed to stump some massive medical brains already… so much so that she doesn’t officially have a prognosis at this point in time. She’s blown past the “maybe not more than 10 days” super-conservative estimate of her first day and is continuing to show increasing strength, but she’s also still showing daily seizure activity. She’s also had difficulty maintaining her temperature a couple times, but that has been easily enough fixed so far with good old fashioned skin-to-skin cuddle time with mom or dad. On the positive side she’s tolerating her feeds quite well and her first doctor’s visit (yesterday) went well (and mommy really likes the doctor too!). So right now we’re in the strange situation where it wouldn’t surprise us or the doctors if she lived two more months or two more decades. We certainly hope and pray that we will be able to get more of an indication of what to expect of her future in the coming days and weeks but that timeline is in God’s Hands.

And while the future is in God’s Hands the present finds our hands very full — though not as full as our hearts are with joy and gratitude: joy to have Anastasia home and gratitude to our family and friends for the massive help spiritually, foodily, babysit-ily (if that’s a word?), and the other ways I would surely enumerate if I wasn’t exhausted. You are all in our prayers and never-ending request that God return your generosity to you many times over!

With love, thanks, and a drowsy smile,
Daddy and Mommy

And the bestest part: Photos!

Coming home!

JoeJoe and his sister!

Grandpa M and Anastasia

Thank you, Aunt B, for my little bunny gown!

Dad took the kids out and about on Saturday so mom could have a quiet(er) house in which to nap. Here they are posing as if to ask “You mean…. like us?”